ALS News Today Forums Forums Living With ALS Winter is coming! What are your tips for avoiding weather-related ALS symptom aggravation?

  • Winter is coming! What are your tips for avoiding weather-related ALS symptom aggravation?

    Posted by Dagmar on November 28, 2023 at 1:01 am

    For those of us living in the Northern Hemisphere, the approaching colder weather can worsen our ALS-related symptoms. The cold temperature can negatively affect breathing, movement, speaking, etc.

    For me, being in a cold draft or emerging from a warm car into cold air can immediately tense up my neck and jaw muscles. This starts a domino effect through my body as each muscle group becomes tense as well. Any movement at this point is a strain. I’ve since learned to dress in layers and always have a small, warm scarf with me. Sometimes I don’t need it, but when I do, I’m thankful it was there to help prevent the nasty effects of tense muscles.

    How does being in cold temperatures affect your ALS symptoms? What do you do to prevent this from happening?

    Corrie replied 5 months, 4 weeks ago 6 Members · 6 Replies
  • 6 Replies
  • Dagmar

    Member
    November 28, 2023 at 10:40 am

    It helps to observe and know what your particular triggers are – – cold drafts on my neck triggers my muscle tenseness. But my hands and feet are OK being slightly cold. If you know what body part to protect, it goes a long way in preventing muscle spasms or feeling uncontrollable tightness.

  • Deleted User

    Deleted User
    November 28, 2023 at 11:16 am

    This is the first thread I have seen regarding the influence of weather and patient comfort in individuals with Amyotrophic Lateral Sclerosis . . . whether weather affects survival is quite interesting. Should Amyotrophic Lateral Sclerosis patients love global warming, or hate it? Prefer living in the desert or the Great White North? I am not aware of any journal papers addressing this issue directly or indirectly.

  • Mary Jo Fairweather

    Member
    November 28, 2023 at 4:12 pm

    I find it’s hard to regulate my body temperature now. Every muscle tenses up if I’m cold. We live in Calgary, and although it’s been mild so far this winter, it was impossible to find a suitable winter coat for what we know is coming. Fortunately, my sister is talented with sewing of all kinds. Her quilts are beautiful. She designed and made me a coat that comes down to seat level at the back with a Velcro closure and snaps in the front. It comes apart in two pieces so it’s pretty easy for my husband to get it on me. It’s wool with a double lining so should be really warm.

    In the house I’ll probably start using an electric blanket when I get chilled.

  • Hal

    Member
    November 30, 2023 at 11:29 am

    For the first year and a half, my symptoms only surfaced after long exposure to cold weather… particularly my hands would curl up and my arms felt weaker. At the time I was living North of Boston. Since then, I’ve moved South but now when the temp is below 65 I feel less functionality in my arms. Part of this I explain by the significant muscle atrophy I’ve experienced because the reality is muscles help insulate your body. Only solution I have is to try and stay warm!

  • Mary

    Member
    November 30, 2023 at 4:15 pm

    I love your coat. What a blessing your sister’s talent is for you. I was relieved to hear we are not alone ….my husband has had a severe problem regulating his body temperature. He goes from burning up to freezing. For 1 1/2 years we kept our home at 60 degrees for his breathing comfort. Now that he is on the vent 23 hours out of 24 we are constantly trying to get a comfortable temperature for him. Is inability to regulate your body temperature normal?

  • Corrie

    Member
    November 30, 2023 at 11:17 pm

    I live in CO and was an avid snowboarder and skier before this darn diagnosis. I also have moderate asthma. Using a scarf or face covering has always been important to protect my lungs off and on the slopes. I have a couple wool neck gaiters that I love to wear as they are easy to pull up and down and keep in place. If the wind is terrible I may throw another layer over it with a tighter weave.

    I love wool or super warm ponchos because the fit with shorter sides and longer front and back makes them work great as wheelchair blankets. I have a portable heated blanket and heated socks for my son’s football games.

    My layering trick for the slopes has always been a moisture wick layer, synthetic or wool, a fleece layer and possibly a second wool layer under that if it’s super cold, and then a wind proof and waterproof layer if waterproof is needed.

    I’ve learned this winter that my body is really struggling with temperature regulation and not getting cold in the first place is super important!

    My biggest challenge so far is finding a pair of warm boots that will work with one of the soft AFO’s that I have.

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